In the clear

Skin update: 3 of my biopsies were normal, 3 were abnormal but with clear margins. No further treatment! :)

It's official

Received official word from my genetics counselor that I officially do NOT have Li-Fraumeni Syndrome and we can officially move forward with radiation therapy. This is good news; exactly what we expected/hoped to hear.

My official start date for radiation therapy is Monday, Feb 2.  New estimated completion date is March 10. Surgery will be approx 5 weeks after that.

Feels good to be out of limbo.

The skin-ny

Skin Stuff:

Mon, Jan 19 --
Had my regular skin exam (every 3 months). I had 6 more biopsies (3 back, 2 abdomen, 1 side). They hurt. Healing takes weeks. What a b*tch. Results in about 2 weeks. Keep in mind, my derm removes things that she would probably just choose to "watch and wait" on a normal person. I'm always amazed when she wants to remove something that looks like a ballpoint pen mark to me... but she knows what to look for and her track record is excellent!

Sarcoma Stuff: 

Wed, Jan 21 --
My genetics counselor emailed me and said to expect my long-awaited results by Feb 2... which is not soon enough to begin radiation on the 28th. So, yes, treatment has been postponed again. Been waiting over 6 weeks now. Becoming a joke.

Other Stuff:

Pelvic MRI was good. No worries there; no further discussion here.

Next steps --
Same as my last post, only we don't have a firm start date.

Moving forward

Genetic testing has finally been approved by my insurance. Test results will still take another week or three...

Tues,  Jan 13 --
Met with sarcoma specialist & radiation oncologist. Although we're still waiting -- still waiting!! -- on those genetic test results, we all decided to move ahead with getting me ready to begin radiation. They set me up with a last minute appointment for my verification simulation that same afternoon. I have ink markings all over my leg (covered with tape) and I'm not allowed to wash them off until I go back in 2 weeks. Easier said than done.

Wed, Jan 14 --
Had a pelvic MRI. Will meet with a gynecologic oncologist when I'm up in Seattle in a couple of weeks... unless she urges me to come in sooner. The MRI results should be available to me within 24 hours, but I won't really know what to make of them until I see the doctor.

Next steps --
Radiation therapy (tentatively) begins on Jan 28th. I will be treated 5 days a week for 5 weeks... my estimated completion date is March 6th. Must find a short term furnished rental in Seattle! Surgery will be approximately 3 months from my radiation start date... so I'm looking at the end of April. More details here: Radiation Oncology at UW Medical Center.

Of course, if my genetic testing results are somehow positive, this is all null and void.

Email

Looks like it's gonna be awhile before I get those results... I just got this email from UW Genetics:

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Hi Blair-

I am so sorry to keep you in this limbo... but I think you will have to reschedule.  I just called the lab.  They have not yet heard from your insurance company with their decision about authorization.  Because the lab can't start the test until they have authorization, the test will take 2-3 weeks after authorization is given.  The representative I spoke to at the lab said she will call the insurance again and ask if our request can be given priority since you and your doctors are waiting for the results to make treatment decisions.

The lab will contact me when they get the decision from insurance and will likely ask me for permission to start the test.  I will instruct them to start and will contact you so you can schedule your return with Dr. Kim.

Again, I am really sorry about this.  I chose to send your testing to this specific lab because I truly thought we'd have results in 2-3 weeks.  I will remember this for the future and apologize that it has not gone smoothly for you.

Please let me know if you have other questions, but I'll be in touch when I have information.

Best,
Emily

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Stevie spent hours on the phone with Moda until a supervisor of some sort promised to have this resolved within 48 business hours. My docs want me to keep the appointment on 1/13, but I'm not sure what we will be discussing now...

I also heard from the gynecologic oncology department at UW Med. They are collecting all of my records and reviewing them... then they will call me back in the next few days to schedule the appropriate appointment. 

The unknown

Big snafu with my insurance over the holidays...  Authorization for genetic testing was stuck "pending" for 3 weeks.  Should be resolved now, but results are still MIA and my appointment for tomorrow has been rescheduled for 1/13. Makes me wonder how many people in this country do not receive timely treatment and are seriously f*cked over due to medical insurance being such a damn cluster.

In other news, I followed my gut and made an appointment with my gynecologist regarding 1) abnormal uptake in my uterus on my last PET scan and 2) a 6.5cm presumed leiomyoma (common benign uterine fibroid) found on a corresponding ultrasound.

PET results:  Uterine fundal activity is again noted, max SUV 10.1, similar to prior and of unknown clinical significance. Persistent increased uptake of uterus, essentially unchanged from prior. May correspond to leiomyoma seen on prior ultrasound per noted, however this amount of avidity is atypical for leiomyoma. Further evaluation with biopsy vs MRI can be considered.

He reviewed these findings and even compared them to my test results from one year ago. The alleged leiomyoma has grown 2cm and my gynecologist considers that to be rapid growth. Because of this and the continuously high uptake on my PET scans, he wants me to see a gynecologic oncologist. I spoke with SCCA and was referred to someone at UW Medical.  Hopefully I can get in to see her when I'm up there on the 13th.